Posts Tagged With: history

What’s in a diagnosis?

hello-my-name-is-001

What’s in a name?  That which we call a rose by any other name would smell as sweet.  Someone smart said that once.

I have been struggling with this concept for a few years now, however in the past few weeks it has come up repeatedly for me.  A diagnosis is the first thing we ask about and want to know things are going wrong.  I did this the other night with a situation that a friend is going through with their sister.  Before I could help it, I found myself asking, “Does anyone know the diagnosis?”  In essence I’m saying, what’s wrong with her and what’s it called?  As if having a name is going to solve all the problems of the world.  That’s obviously not how it is, although it sounds very appealing.  Fortunately or unfortunately, even with a specific diagnosis, we must reexamine our entire life when something is that pervasive and life-changing (like ulcerative colitis or bipolar or diabetes or whatever) to dive beyond the symptoms and figure out what is really going on.

This blog post has been extremely difficult for me to write.  I think it’s because I see both sides of the argument very clearly, and I haven’t decided which side I want to take.  Accordingly, I’m going to break it down as if I’m writing both sides of an opinion piece.  We’ll see if I come to any conclusions….

PRO-DIAGNOSIS

Naming the Game: it’s the way to go!

When I was first struggling with my ulcerative colitis, it was a scary and tenuous time in my life.  I mean, I was 22 years old, no real history of illness, and now there was blood in the toilet at the wrong time of the month.  It was weird.  Especially considering my entrenchment in western medicine at the time, I was desperate for a diagnosis.  Just tell me what’s wrong with me so I can take a pill or have surgery and be done with it.  I heard about a case study once of a woman who was going to the doctor’s office every year afraid of cancer, despite being very healthy.  When she was diagnosed with breast cancer at age 42, she reported feeling relieved.  She had spent such a long time agonizing over the possibility of cancer that once she had a category to put herself in, she felt as if she had a place to belong.  And I think that is the most powerful part of someone slapping a label on you.  Humans are categorizing creatures and it makes us feel good to have a spot to neatly classify things.  “Oh, you have XYZ disease.  Don’t worry.  We have XYZ intervention/medication and that will be fine.  Here’s a group of people to talk to with the same problem.”  By having a doctor tell me I have UC, I was given a starting point.  I could join the IBD support groups and google relevant interventions and feel good that I was part of a select cohort who could understand my pain.

In spite of a common diagnosis though, my UC looks incredibly different from all of the other UC patients that I’ve met over the years.  In fact, from the anecdotal perspective that I’ve experienced thus far, no two patients seem to express UC the same way.  Some have to go to the bathroom 20 times a day.  Some go 2-3 days without pooping.  Some eat meat and bread like it’s going out of style.  Others can only find relief in vegetables and fruits.  Some have tons of blood in their stool, some have none at all.  Some have crazy gas pains and acid reflux, others have never experienced such symptoms.

Which leads me to…..

CON-DIAGNOSIS

Name, schname: what’s the flipping point??!

The importance given to a diagnosis is downright dangerous at times, whether it be for a physical or mental illness. Many people find themselves over-identifying with their disease.  Extremists may even use it as an excuse to do or not do things.  At this point of my life/illness/balance though, I don’t think there is a single diagnosis that I could personally receive that would make me change how I treat it.  Now, this may be a bit unfair given all the work I’ve done over the last 9+ years wrestling with a diagnosis.  If I were going through this process without an initial diagnosis, would I be able to attack it in the same way from the beginning?  It’s cute for me to sit here with 20/20 hindsight and say, “Well going forward, I know this is what I would do” because I’ve already been through it.  And maybe we all have to go through it to figure out what works best for our body.  However I am hopeful that even if I had an undiagnosable disease at this point of my life, I would have solid steps and interventions to make my body the best version it could be.

I prefer to think of a diagnosis as a conversation starter.  “Hey you have schizophrenia?  Great, here’s an area to begin, only know that this isn’t the end all/be all for the rest of your life.”  Even something simple like a common cold is extremely vague and unique to the person.  There are medical and homeopathic remedies that work for one person that will never work for another.  Basically the diagnosis is nice and all, but doesn’t answer the true questions or do the real work of finding a cause and treating that.

A few years ago, The Soloist, with Jamie Foxx and Robert Downey, Jr. was released in theatres and it wasn’t the greatest movie ever, but it deeply moved me.  In 2009 when it came out, I was in a bad place with my colitis and was extremely unclear about what I was going to do next.  None of the medication was working anymore and I was feeling stuck.  The main character (Jamie Foxx) has fairly severe mental illness and it was very hard on his family and those around him who wanted to help him.  In one scene, there is a group counseling session and a character remarks:

I mean, it’s tired. It’s like they can’t find the medication that’s right for me, you know?”

Whew.  I started crying just by her saying that!  haha.  I’m emotional.  Still, it is SO FRUSTRATING despite having a “diagnosis” that doctors can’t seem to help you.  They have a honest motive, yet medicating a chronic illness is so…..ineffective.  It’s hard on the patient and the doctor.

The best scene though was when Robert Downey, Jr. was talking to the man running the support group.  He still was learning about Jamie Foxx’s condition and desperately wanting to help the only way he knew how.  Here is their exchange (I can’t find it on youtube.  It is about 47 minutes in to the movie if you own it or rent it.)

Robert Downey, Jr, talking about Jamie Foxx: What does he have, schizophrenia?

Group Leader: I don’t know.

Well, we should hook him up with psychiatric services and find out, right?

Yeah…I don’t get too hung up on diagnosis.

What do you mean?

What do I mean?

But how do you help someone if you don’t know what they have?

Look at these people. Every one of them’s been diagnosed more than you can imagine. And as far as I can tell, it hasn’t done them any good.

But he needs medication, right?

I’ll tell you one thing he doesn’t need: one more person telling him he needs medication.

This scene made a lot of sense to me on many levels. To be fair, it comes out of an exasperated situation where people are at the end of their rope.  Would the group leader have the same opinion if all them had never been given a diagnosis or talked to a professional at some point?  Probably not.  I guess at the end of the day, the diagnosis is important only as much as it can help you.  As long as you (or your practitioners and healing helpers) aren’t falling on your disease like a crutch, then it can be productive.  Writing things off simply because of a disease title…well I can’t seem to wrap my head around that one.

I’d love to hear your opinion!  Either here in the comments or in an email or in person next time I see you!  I am fascinated by this right now and want more input as my opinion forms….and then of course I’ll change my opinion 50 times after that.  :)

 

ALISA’S MUSIC CORNER

The Beatles!  Maybe you’ve heard of them?  I’ve been listening to them a lot this week.  They have so many ridiculously amazing songs; it’s hard to pick one to talk about.  I’ll pick a cover actually.  The best cover of Let It Be (in my opinionated opinion, of course) was from the movie Across The Universe.  In the movie, they took Beatles songs and made a musical with only a small amount of dialog which was interesting.  The intention and creativity behind the song choices was very well done despite the movie itself being kind of slow.

On the DVD extras, they show behind-the-scenes footage of the supremely talented woman chosen to sing Let It Be.  This is not on the youtube clip, but the director had asked the woman to simply think about the 1967 riots in Detroit and the meaning of the lyrics as she was singing.  Those riots raged for 5 days and included the National Guard, army, tanks and machine guns.  The riots left behind 43 dead, 1,189 injured, 7,200 arrests and over 2,000 buildings destroyed.  It is devastating to think about.

Wow, I must be my father’s daughter, bringing it to war culture out of nowhere!  Nevertheless it gives you a little context for this clip.  Those darn Beatles sure know how to write a moving song.

 

Categories: Balance, Colitis, Diagnosis, Healing, Patient History | Tags: , , , , | Leave a comment

Why Yoga

sun-salutationWhen talking to a friend over the weekend, he mentioned that he had been going to yoga a lot recently and that he, his wife, and his new baby were all better off because of it.  He is debating taking the teacher training at CorePower (which, of course, I gushed about…not biased at all seeing as that’s where I teach), and he wanted to know if it deepened or weakened my practice.  That question put the fire under me to write this post that has been sitting patiently in my brain until now: WHY YOGA?

For me personally, I practice yoga because…..actually, let’s back up.  A little history with why I started yoga to begin with, why I continued with yoga, and why I am waking up to practice tomorrow morning despite writing this post well past midnight.

I took my first yoga class at CorePower Yoga (or CPY) back in March 2009.  As an understatement, I’ll say that I was not hooked right away.  This was not love at first pose.  I, in fact, was only there because my friend Silvia invited me and I have a hard time turning things down.  Plus I think Silvia is cool and I wanted to be cool too.  Combine that with the fact that my sister had already been practicing yoga for a few years and was chirping at me to get in the studio ASAP!!!  Like most things Michelle insists that I will like if I just freaking try it already, I resist as much as humanly possible, inevitably give in, and invariably fall in love with said suggestion.  It’s a fun cycle.  For me, anyway.  Not sure about her sisterly interpretation.  :)

Off I went to yoga class.  And it was honestly pretty terrible.  I won’t say I hated it, but I definitely did not enjoy it.  But Silvia kept inviting me to different yoga studios around PB and it became a little bit of a Saturday morning outing for us and a few others.  I didn’t go consistently, but I went….semi-regularly.  At the time, I knew I had to do something active and I couldn’t find an adult dance studio that I liked.  That’s what I really wanted to do was dance.  I loved my adult jazz class that I grew up with (started sneaking in when I was 12 despite the minimum age being 13), but there was simply no San Diego equivalent to the amazing Tim Hill’s class.   So I persisted with this yoga thing, kind of half-heartedly because I didn’t feel I had many other options.

Why did I initially get turned off by yoga?  The answer I told myself: I sucked at it.  And I hated that I sucked at it.  In general, I can pick things up pretty damn quickly.  I take it for granted that typically (outside of sports), if I focus on something for a relatively short amount of time, I’m decent at it.  Yoga was not one of those things.  I was sore, I was out of shape, I was falling over, I was out of breath, I was in my head and I was “bad” at it.  I did not like going in, time and time again, feeling like I sucked.  To add insult to injury, I didn’t even improve right away!  I didn’t feel comfortable in a yoga studio for about a year.  A year!

But I kept going.  A big reason is that there is a ton of free yoga in San Diego, and who doesn’t like free stuff?  I was bouncing around studios, trying out free week trials and figuring out what I liked/didn’t like about various yoga studios.  This one was too hot, this one too cold.  This one had great class times, but a bad location.  That one had a great location, but crappy teachers.  This one was not enough of a workout, that one left me feeling like I ran a marathon.  Me being the Goldilocks in this situation, CorePower was just right.  I like to call it the Starbucks of yoga.  It’s commercialized, but it’s a top-notch, consistent product.  There’s a lot to be said for that.  Plus I loved the format: we did sit ups in the middle of class, it was heated but not ridiculous,  there were classes all the time, and so many locations that I could drive to four studios within ten minutes of my house.  They have beautiful locker rooms with hairspray and tampons always stocked….they know their audience.  I decided to become a member a full year after that first class.  As you may remember, 2010 was a big year for me trying to finally take care of myself and not be such a doofus anymore about my health.

As I found out along the way, yoga is not something you can suck at.  Turns out the answer I told myself years ago (“I sucked at it”) isn’t actually the true one.  The true answer is that I was not ready to embrace yoga, or to embrace change in my life.  If you compare my yoga timeline to my food/nutrition/lifestyle timeline, yoga came first.  Well, technically the chiropractor came first, but yoga was a close second.  :)  And most importantly, yoga has stuck around the longest.  I think it was inevitable that I stuck with it.  It almost wasn’t even a choice.  I think my ego told myself that I had to keep going in order to “get better” at it.  The reality is that my body needed it, my spirit needed it, and the universe used my ego as the carrot to keep me going back.  Honestly, I’m so grateful that I have yoga now in my life, that I don’t care why I kept going.  I’m just glad that I did.

Being the person I am, I took CPY by the horns once I got there.  I enrolled in a few boot camps, I started cleaning as a trade to get free yoga all the time, I became pretty immersed in the culture and actually starting enjoying myself.  I had a few cathartic moments on the mat and was finally hooked.  Pretty soon, everyone was trying to talk me into teacher training.  I had zero intentions of becoming a yoga teacher.  I’m still not 100% sure why I decided to do it.  However it happened, in the fall of 2011, I found myself enrolled in a 200-hour teacher training program for an activity I had only taken seriously for less than two years.  I was in way over my head.

Teacher training is a 8 week format at CPY.  That’s 200 hours to get done in 8 weeks.  I was extremely naive about how quickly I could become trained.  Even in a 10 week format, that’s an extra 20 hours a week to your normal routine!  Luckily (?), CPY makes you do what is called an “extensions” program once you are done with the first 8 weeks, which meant I then had an additional 4 weeks to get more teaching practice in, and to finalize my hours.  Although teacher training was a grueling process, it was one of the most fulfilling things I have ever done in my life.  It changed how I approach my mat, each of my postures, my breath, my life.  That was the one life-changing event where yoga went from a task I enjoyed to an activity that affected my mind-body-spirit health.  There is SO MUCH to learn and teach about yoga that cannot be contained in this blog, but suffice to say that it truly changed my life.  I now teach twice a week and try to practice three times a week, although I don’t always hit that mark.

One of my fellow UCers once said to me that they are pursuing this holistic lifestyle as a treatment method because they prefer meditation, not medication.  That sums up where I am with yoga today.  Yoga has introduced me to meditation, retreats at the Chopra Center, regular therapeutic massage, and I know that I would still be on my medication if not for yoga.  The short answer I regularly give people when they ask why I practice yoga is that it allows me to breathe.  If only for one hour, I allow myself to shut up, breathe, meditate in motion, and relax.  There is incalculable benefit for deep breathing all on its own!  Yoga inspires me, forces me, enables me to keep breathing.  Today, that’s my why.

ALISA’S MUSIC CORNER

I found this band….or actually, Spotify thought I would like this band (cocky jerks!), called Lake Street Dive…and Spotify was right.  I like them.  They can get a little repetitive, but the lead singer has a really cool Alabama Shakes meets Adele thing going for her.  Two great people to rip off if you ask me.  I was listening to their studio album, but then Jon found this fun video of them singing Jackson 5 live and I was sold.  Check it out!

Categories: Balance, Colitis, Healing, Yoga | Tags: , , , , | Leave a comment

One year later

calendar

A peek into my day today:

  • Wake up!  Hooray, I’m still here!
  • Take two probiotics
  • Go to the bathroom….another great bathroom trip!
  • Get dressed, grab my fresh green juice and head to yoga
  • Have an awesome yoga class with one of my favorite teachers, Tara
  • Come home, eat a homemade Clif bar, finish my juice, get ready for work
  • Simmer my ayurvedic tea for 10 minutes before putting it in my adult sippy cup
  • Head to work, eat leftover yellow curry with lots of veggies and brown rice/quinoa for lunch
  • Snack on nuts, dried mango, grapes, fresh orange/carrot juice
  • Come home, take my multi-vitamin, triphala and curcumin with aloe vera juice
  • Put the SCOBYs into the new batch of kombucha I started last night
  • Eat a salmon burrito and black beans with my beautiful husband
  • Write a blog entry
  • Take one more probiotic
  • SLEEP!

Whew!  Why is today so important that I felt I had to chronicle the whole thing?  Because today is the official one year anniversary of me not taking any medication.  It completely snuck up on me!  It doesn’t seem possible that I haven’t had a hamburger for a year.  How have I survived?  It has been an interesting road.  The experience has been a struggle at times, but worth every second in the end.  If you could look back even just a few years, this daily routine would have seemed ridiculous!  I mean, everything I do is shrouded in hippie-ness.  I love it, it’s just odd to reflect back on how much has shifted over the years.  Gradual changes and tiny steps… and then one day you look around and it’s all new!

I need to once again thank YOU, my friends and family for your seemingly unending support during this last year.  You have all been really patient with my strange food behavior and my sober ways.  Especially when I was being uber-strict, it was tough to maintain socially.  But no one ever made me feel bad or weird or whatever for doing what I was doing.  In fact, it went the other way, where many friends and family members shifted their own approach to food as a result of this blog and how I’ve been eating.  Most notable are my two amazing parents.  Over the last year, my dad has lost 100+ lbs, my mom completed yoga teacher training and actually started some self-care practices….my dad is even walking!  These are things that I used to only dream about.  I’m insanely proud of them.  So thank you to you all for making that happen through your understanding.

In terms of the colitis itself, I keep getting better and better!  This last month in particular has been really smooth and virtually symptom-free.  It’s pretty incredible.  I’ve already started to ease up on my eating habits, and have transitioned into being more flexible with bread or cheese here and there.  I’ve even had a few drinks!  Gasp!  haha.  Still no meals of steak and ribs or anything like that, but I found that I was becoming a little obsessed with the food I was eating.  And as I am constantly reminding myself, it’s not ALL about the food.  I didn’t want to develop an eating disorder, which I could feel brewing.  So I instead found patience with myself, allowed a moderate amount of processed foods to enter my body and I took them in with love.  For the most part, it is okay when that stuff happens.  I can feel in my body where it is off after I derail from the plan, but the whole system is nowhere near as sensitive as it was.  It’s pretty exciting.

At this time last year, I was having 3 or more painful bowel movements per day that were mostly or entirely blood.  I wasn’t even moving real product anymore.  I had the “burny butthole feeling” virtually all the time.  I was bloated, gassy and pretty sad about the whole thing.  I was still taking 3 pills, 3 times a day of asacol and its effectiveness had gone to zero.  I knew I had to make a drastic change (well, many drastic changes), but even so, it was a risk.  Thank goodness it paid off, and then some!  I’m so glad it did.  What a difference a year can make!

Here’s to many more years of learning, growing and continuing down the path of healing!  Cheers!

 

 

ALISA’S MUSIC CORNER

Rent

 

I think it’s safe to say that I grew up listening to the musical Rent.  I think I’ve seen it three times?  I forget.  But I must have listened to the soundtrack at least 200 times (almost as many times as Les Mis).  Every time I hear “Seasons of Love,” I fall even more in love with the whole show, and most of the time I end up in tears.  I can’t think of a better, more fitting measurement of this last year, medication free.   Measure in love.  Enjoy!

Categories: Colitis, Healing, Patient History | Tags: , , , | 8 Comments

Patient history

Caduceus

Disclaimer: I started writing this post before our vacation and did not finish it because there is so much to tell.  Consequently, I’m wrapping it up today.  It’s incredible to me the amount of growth and change I’m experiencing in my life right now after reading this and then reflecting on where I am today, right now.   I’m excited.

—————–

I’ve been reading a lot online lately about healthy living, clean eating, holistic approaches, medical approaches, stories of others with UC, surgery, meditating, medicating….it’s all pretty overwhelming sometimes.  I think it’s worth covering some personal history to maybe find insight on why it is so hard for me to stick to a relatively raw, 100% whole-food diet, paired with a regular meditation and exercise practice, while maintaining an active social life with others who are eating and drinking whatever they want.  I may be asking too much of myself.  :)  But I feel as if it is doable, just a little out of reach.

I realized after reading my posts that I’ve been focusing a lot on symptoms here on the blog and that mirrors what I did in real life.  I know now there is much more than that, that symptoms are the outcome and the CAUSE of the symptoms is what actually needs to be addressed.  However, this is easier for my brain to grab on to, I guess.  And I know the symptoms are important so they can be recognized.  So here goes: a look at my long, tumultuous relationship with this imbalance manifested in my body and known as ulcerative colitis.

I unfortunately (or fortunately, whatever) did not document a lot of the early going-ons of my UC.  From what I can piece together, when I was 22, I got sick (diarrhea-style) in mid-November of 2004.  I could not stop going to the bathroom for about a week.   So I took a few Imodium AD.  It had my initials in it, couldn’t have been that bad.  Well it stopped the pooping, that’s for sure.  Stopped it up for four days.  And when I resumed bowel activity, there was blood in it.  Awesome.  I had had a tiny drop of blood in my poop about a month prior, but nothing else seemed off and it was only the one time which was easy to write off.  This one I could not write off.  It was pretty gnarly.

The next logical step that I knew to take at the time was to go to the doctor.  I had to do bunch of tests which were super fun and completely necessary (yeah, sure).  My favorite was where I had to put a drop cloth over my toilet so I could catch my poop and put it on a tester thing over three different bowel movements.  This way they could see if there were “potentially invisible traces of blood or blood-like substances”.  So I smeared my blood-mucus BMs all over that thing, haha.  I really did laugh out loud when I was doing it because it was that ridiculous.  But they have to go through their protocol.

After the test came back positive for blood being present (who would have guessed that??), they finally scheduled and performed a flexible sigmoidoscopy where they don’t put you under like a colonoscopy, they just stick a camera up your butt and check out what’s going on locally.  If you know the colon, they go up and to the left but don’t make the first big turn.  Basically, they check out the sigmoid colon (an aptly named procedure).  They determined I had proctitis, which is local inflammation of the rectum.  After the diagnosis, I was given a pamphlet, a prescription, and asked if I had any questions.  Ummm….yes, my main question is, what the F is going on?  Actually I wasn’t super alarmed by this (my apathy is alarming to me now), I was just happy to have a diagnosis and a way to treat it.  Seemed like a 1-2 punch.  1-you have colitis.  2-take this drug and it will go away. At the time, I didn’t know it was an “incurable” disease according to western medicine, unless you have a colectomy (removal of the infected area in your colon).  The doctor may have told me that, but I don’t remember and I’m fairly sure something like that would stick in my head.  I do remember him saying they don’t know what causes it, could be genetics or who knows.  So not to worry, don’t change a thing, just take these pills and you’ll be fine.  In terms of disease genesis, it wasn’t until years later I learned the link between Accutane and UC, or links between stress/diet and UC but I don’t attribute any one thing to me having colitis.  It’s so much more than one thing.

Side story: this flexible sigmoidoscopy provided the ultimate setup for one of my favorite moments in life and also in my UC history.  My parents, the very kind and wonderful creatures they are, offered to come with me to the procedure.  After it was over, as my mom and I walked out of the hospital and toward the car, she asked me if I ever had anal sex with Jon and if I felt that may be a contributing factor to my bleeding.  I was like NO!!!! and also….why didn’t the freaking doctor ask me that???  haha.  Seems like an issue that should have come up during all of the questioning and testing that I had to do for months prior to the flexible sig appointment.  Come on.  Plus, I love my mom for asking me that question with genuineness and without making it feel weird if I had said yes.  Mama’s the best.

So there I was with my little diagnosis and my little drugs.  I started taking 3 pills, 3 times a day along with suppositories every single night.  The prescription brand name of the oral drug was Asacol which cracks me up.  Who was sitting around the table deciding that one?  “Well, it is in the colon.” “Yes, and poop does come out of your a-hole.” “What word can we come up with that sounds like a-hole but also incorporates the colon?” “I know!  Asacol!”

At this point, I had just turned 23.  I didn’t change my lifestyle, my eating habits, anything else in my life.  It was my first year out of college meaning there was still quite a bit of drinking and partying on the weekends, so I continued with that.  I also had no desire to do dishes and I was almost never in the kitchen cooking.  I lived on drive-throughs and take-out.  Cheap take-out at that, since I had no money.  I also routinely processed all of my emotions through my stomach but I wouldn’t figure that out for a few years.  The symptoms got better for awhile and then the blood started picking up again.  They put me on different suppositories.  (I was maintaining 9 pills a day mind you, through this whole thing.)  Better for awhile then the blood came back.  Switched me to medicated enemas.

These were amazing drugs.  To this day, they are the most effective medication for me.  The suppositories and enemas are not used as a long term solution for maintenance care like the pills.  They are intended to put you in remission with the pills being the life-long solution.  You administer one enema every night for anywhere from 1-9 weeks.  The first time I used them, I did a 3 week run of nightly enemas, then tapered off, taking them every other day for an additional 3 weeks, and finally twice a week for 3 more weeks (9 weeks total).  It’s strange because all of these drugs I was trying have the same active ingredient but they are administered in a different form with very different results.  There’s a lesson in there somewhere.  :)  With the enemas, I saw the blood switch off overnight.  Literally.  The enemas would go in and I could feel the entire infected part of my colon cool off while the medicine spread through like a welcome breeze.  It reminded me of the old Pepto-bismol commercials and how it would coat the tummy.  The enemas basically coat the blood/mucus areas and wrap them up in beautiful mesalamine until the blood goes away.

I was SO happy.   Here it was, the reset button I needed to have the colitis go away, have my body be happy once again and I could start fresh.  I would keep the pills going at 9 per day until I could taper off and go to 1 pill, twice a day which was my goal for maintenance.  Whew.  What a load off!  Couldn’t believe I had found relief from this thing which had now been going on for almost two years.  My euphoria lasted a few months post-enema treatment.

Unfortunately, life finds a way, or in this case, colitis found a way to keep coming back and tapping me on the shoulder. “I’m here!” it woud say.  “Pay attention to me!  I’m telling you to pay attention to your body and soul!”  But I didn’t get that message.  All I got was, “These stupid pills and enemas are not working.  I’m not going to take them anymore.”  So I stopped taking them.  I still didn’t change any emotional processing, drinking or eating patterns.  The symptoms and causes were rampant but I didn’t care.  I was in a serious state of denial.  I didn’t talk to anyone about it, I just pooped out blood everyday and went about my business like it was no big deal.  Every few years I would think to myself, “man I should really get this under control and go back on meds.”  I would then take some enemas and/or pills (even tried a different oral mesalamine prescription called Colazal, at least they didn’t put ass in the name), clear up the symptoms for a few weeks to a few months, the blood would come back, I’d get frustrated and go off the pills, cycle starts over.  What a fun, blissfully unaware, destructive cycle.  Apparently, I physically wanted someone to slap me in the face before I got any messages.  I went through this for about 6 years.

I did go back and forth to my GI and was told repeatedly that nothing could be done about this with my diet.  I even found some case studies online of people who had cured themselves with diet changes and took those in to my appointments.  My doctor told me they were anomalies and although it couldn’t hurt to try it, she did not see a scenario where I would stop taking drugs.  I trusted her for a long time.  Looking back, she was not exactly a good fit for me as a health practitioner.  :)  I never actually told her that the Asacol wasn’t working anymore because I knew the next line of defense: steroids.  I was NOT about to go on steroids.  To this day I will not.  I would rather have surgery.  I’ve seen those things and I knew, even in my most non-aware days, that the side-effects would be worse than what I have now.  Prednisone is the most often prescribed for UC patients and it works for a lot of people…but at what cost?  I did a lot of prayer on that and knew it was not a way for me.  If steroids are ineffective after awhile for treatment, then the doctors start prescribing drugs that completely suppress or weaken the entire immune system.  (6MP is a commonly prescribed one for colitis.)  A lot of these same drugs are used to fight cancer.  If those don’t work, they start cutting and remove the infected region through J-pouch or ostemy bag surgery.  This slideshow does a good illustration of the surgeries.   Again, I didn’t know much back then, but I knew this was not something I wanted to put my body through.  I feel blessed that I never was told to go through with these severe medications or surgery, because if I was worse in the beginning, and the doctor had told me to do that first thing or in the first few years…..I probably would have blindly said yes.

During this time, I had many, many nights where I would stay up doing research on the after-effects of having UC for an extended amount of time and my main concern was (still is there sometimes) having this turn into colon cancer.  I didn’t care about what was going on right now, but I was worried that if I didn’t get it taken care of then I would be at a hugely increased risk of cancer.  Most websites will tell you that having UC for 5-8 years really makes the risk factor take off.  I spent more nights than I care to remember just crying about not being able to grow old with my wonderful husband (bf at the time) or have kids or whatever just from this stupid disease.  I had bouts of anger and “why me” pity-parties and all of the stuff that comes along with chronic disease.  I knew I had to do something, but I honestly did not know what.

In 2010, I finally started evaluating my lifestyle choices.  I thought to myself, well maybe it is worth looking at this because obviously these meds are not a long-term solution.  I started going to a chiropractor 3 times a week.  She also had a background in nutrition which was a nice bonus.  First step toward better physical health: check.  Step two: exercise.  I had tried yoga a few times but didn’t like it because I wasn’t very good at it.  I am nothing if not competitive and if I couldn’t dominate yoga, I didn’t want to do it.  What I in fact wanted to do was dance, but couldn’t find a good adult studio in San Diego.  So I started going to every yoga studio in SD that offered a free week of classes.  There are a TON of yoga places in SD and it was fun to check them out.  I ended up at CorePower because they were a little more hardcore than other yoga places.  They sat down and did freaking situps in the middle of class for goodness sake.  I was in.  I joined as a member and started going 3-4 times per week.  Physical movement: check.

Next big step was food.  I honestly did not think my diet was that bad.  Plus I was thin so I didn’t have to ever think about counting calories, which of course means my nutrition didn’t matter (or so I apparently thought).  My first foray into a diet shift was an all-raw food diet at the suggestion of my chiropractor.  She suggested a 5-day cleanse (Mon-Fri) with a juice-only day on Wednesday.  I agreed, but she did not know my insane competitive nature….I said, 5 days?  That’s for lame-o people.  I’m doing it for at least two weeks, if not longer.  I lasted just under 3 weeks.  I did “cheat” and have oatmeal for breakfast for the last week.  The major thing I noticed was not a shift in UC symptoms (which did do well for awhile) but rather my ENERGY.  I had always been a person who falls asleep anywhere and everywhere.  I didn’t think it was weird.  After this 3 week raw food thing, I was bouncing off of walls, and with zero caffeine.  Almost three years later, I rarely take naps and that feeling of tiredness in the middle of the day or early evening is just gone.  I used to be tired all the time.  I am so happy I did that first cleanse just so I could see how easily my body could adapt to something new.

However, as Papa would say, that worked so well that I stopped doing it.  I didn’t realize at the time that the diet/cleanse would have to be a lifestyle change.  I thought it would be a temporary reset and I could go back to my normal food.  So I went back to eating crap food….better than before with the drive-through and take out, but crap nonetheless.  I love anything that comes out of an oven, mostly desserts and breads.  I transitioned to more salads in my lunch life, which is good and continues now, but breakfast, dinner and snacks were not balanced.  Mostly processed, refined flour and lots of meat and dairy.  Back marched in the bloody poop and I pressed on.

I saw an acupuncturist for a few visits which was immensely helpful.  Like all of my treatments, it worked for awhile, then it stopped working (sensing a theme yet?) plus it was expensive.  I know I didn’t I got out of it what I could have had I stayed for more treatments.   I would like to return to an acupuncturist actually.  I loved it.

om

Blah, blah, blah, is this over yet?  haha. I’m falling asleep yet again writing it.  There’s an om symbol so we can have a picture to keep us awake.  Anyway, at this point of late 2010, I’m starting to get the message that there may be concerns more deeply at play than food and exercise.  I experimented with even more therapies: I stopped drinking alcohol for months at a time; I slowly tried to clean up my food choices and started cooking more and more.  I practiced yoga a lot and even did a teacher training so I could teach others about this beautiful practice.  I started brewing my own kombucha (quite delicious if I do say so myself).  All came to a head this past August when I made a strong decision to not be on the meds again which I had resumed in June of 2010, this time hopefully for the duration.  I started the vegan, non-processed adventure.  I started seeing an actual therapist to work through deeper emotional issues.  Last week, I started getting regular massages.  I began the process of shifting my perspective of my “disease.”  Maybe it’s something that I need to listen to rather than be pissed off at.  What is this persistant illness telling me?  Where am I off kilter? What can I do to reverse this damage that I’ve done to my spirit and self-image?

At this point, I’m truly appreciative of having UC.  It’s like a spotlight on where and when I need to focus my attention.  My body/spirit doesn’t like that?  Pain in the butt starts.  “Look at me!  Pay attention!”  It has been a long and interesting road, but I finally feel as if I’m in a place to do that.  I have been blessed with a rewarding job that allows me to only work 30 hours a week, leaving more time for grocery shopping, going to yoga, prepping food and loving my whole self again.  It’s exciting to know that all of the necessary elements are already in my body to heal me!  I just have to set them up for success.

This has been a cathartic opus of an entry.  Bravo for sticking it out to the end.  I’m going to go eat a pepperoni pizza now.  HA!  That was a joke.

ALISA’S MUSIC CORNER

CountingCrowsRecoveringTheSatellites

I had it on shuffle but then “Goodnight Elisabeth” came on so I had to listen to the album.  It’s on “Recovering the Satellites” by Jon’s favorite band, the Counting Crows.  Before I met him, I was pretty sure CC had only written two or three songs after Mr. Jones.  Since we started dating, I’ve now listened to all of their albums about 100 times each and attended 6 live concerts, each of which was better than the last.  Adam Duritz is a haunted soul who writes damn good music and performs it even better.  I’m not sure what I did with my life before “Raining in Baltimore” but I know it’s better now because of that song and so many others.  Thank you husband.

Categories: Colitis, Patient History | Tags: , , , | 6 Comments

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